Fines, orders, fear and consent? medical research in east africa, C. 1950s

Developing World Bioethics

Volumn 10, Issue 1, 2010, Pages 34-41

  Graboyes, Melissa ^a  

^a BOSTON UNIVERSITY   (United States)

Author keywords

Africa; Consent; Research; Traditional knowledge

Indexed keywords

AFRICA; ARTICLE; ETHICS; FEAR; HUMAN; HUMAN RELATION; INFORMED CONSENT; MEDICAL RESEARCH; PATIENT SELECTION; PERSONNEL; RECUMBENCY; RESEARCH ETHICS; STANDARD;

AFRICA, EASTERN; BIOMEDICAL RESEARCH; DECEPTION; ETHICS, RESEARCH; FEAR; HUMANS; INFORMED CONSENT; PATIENT SELECTION; RESEARCH PERSONNEL; RESEARCHER-SUBJECT RELATIONS;

EID: 77953473306     PISSN: 14718731     EISSN: 14718847     Source Type: Journal    
DOI: 10.1111/j.1471-8847.2009.00274.x     Document Type: Article

References (36)

1. M. Lyons. 1992. The Colonial Disease: A Social History of Sleeping Sickness in Northern Zaire, 1900-1940. Cambridge, UK: Cambridge University Press; L. White. 2000. Speaking with Vampires: Rumor and History in Colonial Africa. Berkeley, CA: University of California Press; K. Hoppe. 2003. Lords of the Fly: Sleeping Sickness Control in British East Africa 1900-1960. Westport, CT: Praeger.
2. This is a low estimate based only on the references to trials I have personally seen in the materials in East Africa. I only counted trials that were clear about the number of subjects they included, and I relied on the estimates of the researchers. The East African Medical Survey alone handled 'tens of thousands of lab exams' between 1948 and 1955. East African Medical Survey and Research Institute. 1955. East African Medical Survey and Research Institute Annual Report, 1954-55. Nairobi: Government Printer.
3. Many of the archival materials have sat undisturbed for the past half-century. While working at the Tanzanian National Institute of Medical Research (NIMR) research stations in Mwanza and Amani, I discovered previously un-cataloged materials. When referencing these materials, I cite 'NIMR Mwanza' or 'NIMR Amani'.
4. Oral data was gathered through approximately 40 formal interviews and dozens of informal conversations in 15 different locations in Kenya and Tanzania during 2008 while conducting fieldwork for my doctoral dissertation. This research was supported by a National Science Foundation Graduate Research Fellowship.
5. R. Moore & A. Roberts. An Investigation of the Pattern of Disease Prevalent in Parts of the Rufiji District. Dr Moore Papers. NIMR Mwanza.
6. Blood is intimately linked in peoples' minds with medical research. This may be because many medical researchers explain 'research' to people as the taking of blood and the examination of blood under a microscope to look for the 'bugs' that cause sickness.
7. December 4, 1953. From Trant to Director Laurie. NIMR Mwanza.
8. February 27, 1951. From Director Laurie to Trant. NIMR Mwanza; November 13, 1950. From Administrative Officer to Trant. NIMR Mwanza.
9. M. Malowany. 1997. Medical Pluralism: Disease Health and Healing on the Coast of Kenya, 1840-1940 (Ph.D. Dissertation). Montreal, QC: McGill University.
10. March 2, 1956. From Brayne Nicholls to Provincial Commissioner, Coast. 'Elephantiasis Survey: Pate Island.' DC/LAMU/2/23/29. KNA.
11. Daytime blood tests for filariasis will produce false negatives; only in the evening do the micro-filare become active in the peripheral blood.
12. March 13, 1956. Letter from Brayne Nicholls to Senior Parasitologist. 'Elephantiasis Survey Pate Island.' DC/LAMU/2/23/29. KNA (emphasis added).
13. Ibid. 14The botched attempt in the 1950s soured medical researcher-villager relations throughout the 1960s and 1970s. DC/LAMU/2/23/29 and BY/13/44. KNA.
14. J. Comaroff & J.L. Comaroff. Occult Economies and the Violence of Abstraction: Notes from the South African Postcolony. Am Ethnol 1999; 26: 279-303; J. Fairhead, M. Leach & M. Small. Where Techno-Science Meets Poverty: Medical Research and the Economy of Blood in The Gambia, West Africa. Soc Sci Med 2006; 63: 1109-1120; P.W. Geissler. Kachinja are Coming! Encounters Around Medical Research Work in a Kenyan Village. Africa 2005; 2: 173-202; B. Weiss. 1996. The Making and Unmaking of the Haya Lived World: Consumption, Commoditization, and Everyday Practice. Durham, NC: Duke University Press.
15. The information presented in this section is a compilation of information I gathered in 20 interviews and dozens of informal conversation with people in Mwanza region of Tanzania in July and August 2008.
16. As just one example, a woman told me how researchers (possibly Bwana Matende) had come to her primary school in the early 1960s to steal blood and had killed students in the process. While there were never any deaths at her school, archival records show that six children did die at a nearby school after being injected with an experimental bilharzia drug. Annual Report, Ministry of Health, Mwanza Region, Tanzania. 1965; August 6, 2008. Mama Christine Paolo. Bukumbi, Tanzania.
17. Geissler uses the concept of 'idiom' to describe how people use blood stealing stories. Geissler. op. cit. note 15, pp. 174-175.
18. August 7, 2008. Mzee Thomas Inyassi. Kigongo, Tanzania.
19. Ibid. 21August 8, 2008. Bibi Agnes Kagera. Bukumbi, Tanzania.
20. F. Lugard. 1923. The Dual Mandate in British Tropical Africa. London, UK: Blackwood and Sons; B. Berman. 1990. Control & Crisis in Colonial Kenya: the Dialectic of Domination. London, UK: James Currey.
21. S. Berry. Hegemony on a Shoestring: Indirect Rule and Access to Agricultural Land. Africa. 1992; 62: 327-355.
22. Middle men' included chiefs, elders and others with political power in the village - not just those who were employed by the colonial government.
23. East African Medical Survey and Research Institute. 1954. East Africa Medical Survey Annual Report, 1953. Nairobi: Government Printer.
24. September 5, 1958. Letter from District Commissioner, Lamu To Mudir of Faza and Witu. 'Filariasis Investigation.' DC/LAMU/2/23/29. KNA.
25. August 17, 1954. Letter from Trant to Senior Medical Officer, Tabora. Dr Trant Papers, NIMR Mwanza.
26. Interviews in Mwanza, Ukara and Ukerwere Islands. Further evidence that the practice of fining was used by chiefs during the colonial era comes by looking at the KiSwahili word. 'Kupiga faini' is derived from the English word 'fine' which is added to the multi-purpose KiSwahili verb 'kupiga' - to do or make.
27. Interviews in Mwanza, Ukara and Ukerwere Islands. July and August 2008.
28. M. Barry. Ethical Considerations of Human Investigation in Developing Countries: the AIDS Dilemma. NEJM 1988; 319: 1083-1086; N.A. Christakis. The Ethical Design of an AIDS Vaccine Trial in Africa. Hastings Cent Rep 1988; 18: 31-37; C.E. Taylor. Clinical Trials and International Health Research. Am J Public Health 1979; 69: 981-998; Ijsselmuiden and Faden are an exception to this rule, and present a thoughtful analysis of the inappropriateness of the concept. C. Ijsselmuiden & R. Faden. 1999. Research and Informed Consent in Africa - Another Look. In Health and Human Rights: A Reader. Mann, Gruskin, Grodin & Annas, eds. New York, NY: Routledge: 363-372.
29. S. Feierman. 1990. Peasant Intellectuals: Anthropology and History in Tanzania. Madison, WI: University of Wisconsin Press.
30. H. Kjekshus. 1977. Ecology Control and Economic Development in East African History: The Case of Tanganyika, 1850-1950. London, UK: Heinemann; J. Giblin. 1992. The Politics of Environmental Control in Northeastern Tanzania, 1840-1940. Philadelphia, PA: University of Pennsylvania Press.
31. A.R. Cook. Syphilis in Uganda. Lancet, December 12, 1908: 1771.
32. C.S. Molyneux et al. 'Even if they ask you to stand by a tree all day, you will have to do it (laughter) . . . !': Community Voices on the Notion and Practice of Informed Consent for Biomedical Research in Developing Countries. Soc Sci Med 2005; 61: 443-454: 446. Emphasis added.
33. E. Hobsbawm & T. Ranger, eds. 1992. The Invention of Tradition. Cambridge, UK: Cambridge University Press; T. Spear. Neo-Traditionalism and the Limits of Invention in British Colonial Africa. J Afr Hist. 2003; 44: 3-27.
34. Mzee Matola. Amani, Tanzania. October 17, 2008.
35. P.W. Geissler & R. Pool. Popular Concerns about Medical Research Projects in sub-Saharan Africa - a Critical Voice in Debates about Medical Research Ethics. Trop Med Int Health 2006; 11(7): 976.
36. No date [late January 1956]. From Goiny to Senior Parasitologist. 'Activities during January 1956 - Lamu Pit Latrine Campaign, Patte Island Filariasis Investigations.' DC/LAMU/2/23/29. KNA.